Blogs

You Don’t Look Sick: ‘My Skin Condition Causes A Lot Of Pain But I Gave Up My Blue Badge Because Of Abuse’

Invisible Illness

  By Laura Abernethy in Metro.     Welcome to You Don’t Look Sick, our new weekly series about invisible illness and disabilities. There are 13.9 million disabled people in the UK, but for many of them, you would have no idea anything is wrong. Lots of people suffer from debilitating symptoms and daily struggles […]

Trial By Error: Stupid Studies

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    By David Tuller, DrPH. Boy, it’s hard to keep up with all the stupid studies coming out! But that’s no reason not to take a look at a couple of them. (In both cases, I’m just making a few comments. Much more could be said about each of these studies. You can read […]

Using A Cane With An Invisible Disability

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  By Kit O’Connell in Approximately 8,000 Words Blog.   I thought I’d write for a moment about what it means to use a cane as a person with an invisible disability (fibromyalgia). Invisible disabilities are life-altering health conditions which are nonetheless not always visible to a normal observer. Even a trained medical professional might miss […]

Why I Gave Up Trying To Be The ‘Good Patient’

Chronic

    By Alexis Redenbach in The Mighty. We’ve all seen the movies: the patient stoically braves the struggles of treatment and only gets angry one time, in a huge but righteous burst of frustration. The person in a traumatic accident is told they will never walk again but by sheer force of will, they somehow […]

Part II: ME/CFS, Sepsis And Glycocalyx

Blood Cells

  From Syndrome A.   To recap from the previous blog post “Part I: Blood Flow in Sepsis & ME/CFS”, ME/CFS looks like a lot like sepsis and sepsis is an inflammatory illness of blood vessels. The blood vessel problems in sepsis interfere with oxygen delivery to cells. The particular kind of blood flow problem that you find in […]

Allodynia: A Rare, Distinct Type Of Pain In Fibromyalgia And ME/CFS

Chronic Pain

    By Adrienne Dellwo in Very Well Health.   Allodynia is a rare type of pain, generally on the skin, that’s caused by something that wouldn’t normally cause pain. This pain type is frequently associated with fibromyalgia, and some people with chronic fatigue syndrome have it as well. Other conditions associated with allodynia include neuropathy, postherpetic neuralgia (shingles), and migraines. Outside of these conditions, […]

Wheelchair Friendly Walks In Yorkshire

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    From Fenetic Wellbeing.   Can you remember a sunny bank holiday? Us neither. But on the off-chance the heavens don’t open, we’ve put our heads together and come up with some cracking wheelchair friendly spots for a day out in Yorkshire. Can you remember a sunny bank holiday? Us neither. But on the […]

How To Track Down Your Old Pensions

Pension

    From SAGA Magazine.   There’s more than £400 million of unclaimed pension savings in the UK, here are our top tips for tracing your old pension pots… More and more people are moving jobs several times throughout their working life and accruing multiple pension pots along the way. With the disappearance of the […]

Shock, Hypoxia & ME/CFS: Part I

Nervous system

From Syndrome A.   When I first got sick with ME/CFS, I was a teenager. I was quite baffled when I suddenly became too exhausted to make it to classes, stopped sleeping almost entirely and started sweating profusely. I sweat raindrops: huge drops of sweat rolled down my sides constantly. No antiperspirant was a match […]

To Those Who Say Chronically Ill People Are ‘So Lucky’ Not To Work Full-Time

Chronic Illness

  By Alexandra Ellen in The Mighty.   Have you ever had the “joy” of experiencing a conversation similar to this on a Sunday afternoon? “What time do you start work tomorrow?” “Ummm, I don’t work on Mondays.” “Ahhh, you’re so lucky!” I lost count of the number of times I’ve had similar conversations. I […]

Trial By Error: The Cost Of MUS

David Tuller

    By David Tuller, DrPH In January, I wrote about the problematic online training course developed by the Royal College of General Practitioners and touted by Steve Brine MP as addressing the “misconceptions” about ME (or CFS/ME, as the online course calls the illness). The lead author of the course was Carolyn Chew-Graham, a professor of general […]

Enhancing Blood Volume In Chronic Fatigue Syndrome (ME/CFS) And Fibromyalgia

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    From Health Rising.   “You guys are about a litre short in blood volume, ok? If I’m sitting at five litres, you’re sitting at four. So, you’re really, really sensitive to blood volume changes. If you’re a little dry, you crash. ” Dr. Nancy Klimas.   The low blood volume finding in chronic […]

How To Move Forward When You’re Grieving Your Life Before Chronic Illness

Chronic

  By Paige Wyant in The Mighty.   When many people hear the word “grief,” what often comes to mind are the complex emotions a person experiences in the wake of a loved one’s death. Though this is certainly an accurate representation of grief, it is by no means the only one. Grief is much […]

Pacing Is A Simple Concept. So Why Do I Find It So Hard ?

Pacing

      By Jo Moss in A Journey Through The Fog.   Living with a chronic illness like ME/CFS creates many challenges. Along with the multitude of symptoms, we also have to learn to adapt to the restrictions placed on our lives and to manage our limited energy levels. The term “pacing” crops up […]

My Label And Me: I’m Not Tired And Lazy, I Have ME

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  By James Wilson in The Metro. you’re just a bit tired,’ says my friend. ‘Just have another beer, you’ll be fine’. Yep, I am tired but probably not as they, or you, know and understand it. I can’t rest and get my energy back like you can and, as much as I’d like to, […]

21 People Describe What Sensory Overload Feels Like

Sensory

  By Melissa McGlensey in The Mighty.   Sensory overload happens when too much sensory stimulus is occurring at once — it can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting — or a hundred other things. It’s often associated with certain diagnoses like autism, sensory processing disorder, chronic fatigue syndrome, fibromyalgia, post-traumatic stress […]

Amy Carlson – An Ally To The ME Community

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    By Adriane Tillman in #MEAction.   Allies are critical to the success of any movement and even more so in the case of people with myalgic encephalomyelitis (ME). So many people with ME are bedridden or housebound and unable to participate in some advocacy and activist actions. While we at #MEAction work hard to […]

The ‘Energy Bubble’ Analogy That Can Help Explain Pacing With A Chronic Illness

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    By Christina Baltais in The Mighty.   Pacing is about energy conservation, both physical and emotional. When you’re living with a chronic illness, it’s an essential skill for preventing flare-ups or “crashes.” This “energy bubble analogy” can be useful to help you visualize and understand the limits of your energy, and help you explain them […]

We Need To Stop Talking About Chronic Illness In This Particular Way

chronic-illness

  By Annie M. In The Mighty.   Have you ever noticed how people talk about illness, even mild illnesses like colds? We often say we are fighting them. We battle colds and fight the flu. We call our friends with scary medical conditions “warriors,” and we encourage them in their “battle” against their illness. It’s true […]

Trial By Error: Professor Sharpe’s Retraction Requests

David Tuller

    By David Tuller, DrPH After this month’s release of the Health Research Authority’s PACE analysis, Professor Michael Sharpe sent e-mails to at least two US publications requesting a retraction or major correction of critical articles. Professor Sharpe’s e-mails accused the writers involved of suggesting that PACE was “fraudulent.” This accusation was not true. In […]

The Basics: A Guide To Learning, Sharing And Making A Difference In Chronic Fatigue Syndrome (ME/CFS)

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    By Cort Johnson in Health Rising.   Welcome to Health Rising. This page is designed to give you basic information on chronic fatigue syndrome (ME/CFS) and provide opportunities for you to learn about it, share your experiences, and participate in bringing about the end of this disease. It is focused on the U.S. […]

14 Things People May Not Realize We Do Because Of Sudden Flare-Ups

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  By Cassidy Colbert in The Mighty.   Living life with a chronic illness is basically living life constantly walking on eggshells. One day you may be bouncing off the walls because you are so full of energy and the next you are lying on the cool bathroom floor — your only source of relief from the agonizing […]

Foldalite Travel Powerchair Review

Natasha Lipman

    But Natasha Lipman.   I can’t believe that it has almost been a year since I finally bought my first ever powerchair, the Rascal P321 (also called my ‘Mario Kart’ or ‘The Dizzy Rascal’ by my friends – cos I have PoTS and am always dizzy, gettit?) It truly was a long time coming, and […]

Facing Skepticism From Others That My Illness Isn’t ‘Real’

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  By Rebecca Handler in The Mighty.   Those of us with chronic illness are often forced to wage two wars at once. Not only must we cope with the immeasurable impact of our illness, but many of us also face the burden of skepticism from peers, the medical community, friends, and even family. If you’re anything […]

The Power Of Listening

Doctor

      By Naomi Whittingham in A Life Hidden.   In September 2016, I contributed to a training course for junior doctors at my local hospital.  The following was used as part of a seminar entitled “Patients and doctors as partners in learning”.  I used the term ME/CFS for this piece, as this is how ME is […]

Dealing With Anger Now That I Have Chronic Fatigue Syndrome

Jamison

  By Jamison Hill in The Mighty.   I love to break things. Yeah, I know, who doesn’t? But I get such a satisfying feeling when I break something. Maybe not a bone, or a really expensive gadget, but breaking something cheap and discardable is satisfying to me. Very satisfying! In 2011, after I was sick for […]

Trial By Error: BMJ Amends Last Week’s PACE Article

David Tuller

    By David Tuller, DrPH.   Last Wednesday, the UK Health Research Authority released a letter reviewing its analysis of the PACE trial. Members and supporters of the GET/CBT ideological brigades have misrepresented the HRA letter as a vindication of the study. On Thursday, BMJ posted an article about the HRA letter by science journalist Nigel Hawkes. The […]

The Emerge Media And Research Digest (017) 8th February 2019

Australia

    Friday 8th February 2019 Latest news and research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome   Welcome to the Seventeenth Emerge Australia Media and Research Digest!   To read the digest, click on the link below:     Link to ME Digest

A Winter’s Tale – A Former Mountain Climber Reflects On Post Exertional Malaise And ME/CFS/FM

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By Simon Parker in Health Rising.   Fifteen years ago I was diagnosed with Fibromyalgia and ME (aka Chronic Fatigue Syndrome), a debilitating condition that includes continual pain and delayed fatigue as its primary symptoms. I often find myself trying to explain to other people what the delayed fatigue is like by giving an example […]

Guest Blog: Life In The Slow Lane – Musings Of A Police Officer On A Diagnosis Of ME/CFS

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  From Disabled Police Association.   Colin Paine is a Detective Chief Superintendent in Thames Valley Police. He is currently working on the Police Spending Review with the NPCC. Here he reflects on his diagnosis of Myalgic Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS).   Police work feels inherently fast paced. It is in the nature of our work that […]

Metabolomics Study Suggests Chronic Fatigue Syndrome May Be Oxidative Stress/Low Oxygen Disease

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    By Cort Johnson in Health Rising.   Disturbances in circulation and provision of oxygen to tissues could underlie many symptoms of ME/CFS. Metabolomics has quickly become one of the hottest research trends in chronic fatigue syndrome (ME/CFS).  The metabolomic work in ME/CFS started with the Australians, picked up speed when Ron Davis and […]

Who Reviews ME/CFS Applications For NIH ?

Funding

    by Jennie Spotila in Occupy M.E. There is no question that NIH’s funding of ME/CFS research has been minuscule relative to the size of the public health crisis. Review of ME/CFS grant applications at NIH has drawn scrutiny from the public as one contributing factor. The public perception is that the grant review panelists have not been […]

Homeless: How AMMES Is Keeping People With ME In Their Homes

Lonely

By Erica Verrillo, who is President of the American ME and CFS Society (AMMES) in #MEAction. Years ago, Dr. Bell made the observation that many people currently living in cars most likely had chronic fatigue syndrome (CFS). (The acronym myalgic encephalomyelitis (ME/CFS) was not used at that time.) Under any circumstances, the threat of homelessness […]

Eat To Beat High Blood Pressure

Vegetables

  By Patsy Westcott in SAGA Magazine.   By focusing on your diet, you can help to alleviate the threat posed by this ‘silent killer’, says nutrition expert Patsy Westcott. One in three adults in the UK have high blood pressure (BP) and, according to the British Heart Foundation, around seven million people have it […]

Trial By Error: A Recap Of The School Absence Study

David Tuller

  By David Tuller, DrPH Last week I broke the news that Bristol University is conducting an independent investigation of a number of studies that were exempted from ethical review on the grounds that they qualified as “service evaluation.” Because the issues involved are confusing and complex, I thought it would be helpful to repost here part […]

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